Hope in the World of Eating Disorders and Diabetes

Erin Akers shimmied into another pair of pants. The button clasped without protest even though they were three sizes smaller than she was used to wearing. It wasn't the first time. She'd been reaching for smaller-sized clothes a lot lately. She smiled. She thought it was about time she became someone other than the fat girl.

Medically obese. That's what the doctor had called her. Before she even hit puberty, she was worrying about calories and fat and whether the other kids at school would pick on her again today when they had done such a brilliant job of it yesterday.

But it seemed as if things were changing. Clothes were fitting better, and she had lost a lot of weight. It was bizarre, considering she hadn't stopped overeating. In fact, the only change she'd made in her life was the amount of time she spent caring for her diabetes, which wasn't much time at all. (Then again, she felt it wasn't especially fair that she'd been diagnosed with type 1 diabetes at 10 and was expected to change the way she ate just because her body hated her.)And then it hit her: Before her brother was diagnosed with type 1, he'd lost a ton of weight—until he started taking insulin. Maybe, she thought, in forgetting her insulin she was inadvertently shedding pounds. "All of these pieces clicked into place," Akers says now. "An eating disorder was born right there."

Get Help

The first step to recovering from an eating disorder is getting help. The following sites and centers cater specifically to people with both diabetes and eating disorders.

If the Disorder FitsIt wasn't an eating disorder in the traditional sense of the term. Akers didn't restrict what she ate or binge and purge. Instead, she injected such small amounts of insulin—just enough to avoid hospitalization—that the weight melted off. The media call it "diabulimia." Doctors often lump it in with other "eating disorders, not otherwise specified," a vague diagnosis of what is a fairly common disorder.

Ann Goebel-Fabbri, PhD, a psychologist at the Joslin Diabetes Center in Boston and an expert on eating disorders in people with diabetes, is on the fence about the unofficial term. It's misleading, she says, because the mash-up implies diabetes and bulimia (binge eating followed by self-induced vomiting). Actually, people can have any of several eating disorders with diabetes, including anorexia (refusing to eat in an excessive desire to lose weight), binge-eating disorder, or insulin restriction, often in combination with bingeing. But the word has also eased some of the isolation that comes with the dual diagnosis. "It's that message of 'If there's a term for it, there must be other people who have it,' " Goebel-Fabbri says.

There's fact behind the message. Girls and women with type 1 diabetes are twice as likely to develop an eating disorder as those without diabetes. (That's right—girls and women. Eating disorders affect people of all ages, not just teens.) Part of the link, experts say, comes from diabetes management that focuses on food and numbers, and may lead girls and women to judge being "good" or "bad" based on eating patterns or blood glucose level.

Whether or not the same is true for men with diabetes isn't clear, but Goebel-Fabbri says the issue was a topic at a recent medical conference she attended. Studies are also limited in people with type 2, though eating disorders seem to be more evenly split in type 2 between men and women and are more widespread across all ethnicities. The most common condition for type 2s is binge-eating disorder, though researchers are trying to figure out which comes first: the diabetes or the bingeing?

Desperately Seeking DiagnosisAs common as eating disorders are in women with type 1, they can be hard to diagnose. At 14, Erin Akers found this out the hard way.

She was well into her eating disorder when she touched on the subject with her doctor. By then, she'd lost a noticeable amount of weight while still overeating. The very idea of it gave her a sort of fleeting high that made up for the lethargy she felt. She had no intention of quitting when she stepped into the exam room, but then her pediatric endocrinologist entered. She could trust him, this man who had diagnosed her diabetes and served as a sort of father figure. So she answered honestly when he asked if she'd been skipping her insulin.

"You're a noncompliant patient," he said.

Akers pushed through the fear and said, "I can't stop."

The doctor dropped her as a patient. "I felt like it was a thumbs-up to keep going," she says. "Everyone who told me there wasn't an issue convinced me it wasn't an issue."

It's not an uncommon story. Even when high blood glucose put Nicole Lewis, now 27, in a coma and even when she spilled her eating-disorder secret to her family doctor, she remained undiagnosed. "He brushed me off and said, 'You're not fat.' I was being brushed off by everybody. Every single person I told it to."

Signs of an Eating Disorder

Diagnosing an eating disorder is difficult—even more so when diabetes comes into play. Symptoms of an eating disorder and insulin restriction can mimic poor diabetes control, making it hard for family, friends, and even doctors to notice. There are warning signs, of course, but whether they point to disordered eating or unmanaged diabetes is usually decided on a case-by-case basis. "Having an awareness of these as possible signs—but certainly not as diagnostic [rules] per se—is the important thing," says Goebel-Fabbri. "The signs are just a good way to alert a family member or health provider that an in-depth screening is needed."

Weight loss (sometimes despite

increases in calories)

High A1C

Repeat hospital visits for diabetic ketoacidosis

Wide blood glucose fluctuations

Drop in the frequency of blood glucose testing

Not keeping a blood glucose log

"Forgotten" meter at each doctor's appointment

Not changing insulin pump sites

Prescriptions not needing refills as often

Excessive exercise, inducing hypoglycemia

Irritability

Headaches

Nausea and vomiting

Anxiety

Menstruation problems

Withdrawing from friends

Hair loss

Dry skin

Part of the problem is that many doctors don't know the signs of an eating disorder (see "Signs of an Eating Disorder," right). "There's really an unawareness that it is an eating disorder," says Dawn Taylor, PsyD, LP, a psychologist with the Park Nicollet Melrose Institute's eating disorder center in St. Louis Park, Minn. "I can't tell you how many times I've heard, 'If you just get your diabetes under control, you'll be better.' "

Exactly how underdiagnosed eating disorders are is debatable—and fodder for future research. What is known is that most are caught much later than they should be. "You kind of have to be really aware [in order] to see it," Taylor says. "It's really easy to hide."

It's a secret that poses serious risks. Eating disorders have the highest death rate of all mental illnesses. And, according to a study by Goebel-Fabbri, women with diabetes who restrict insulin have a three times greater risk of dying than those without an eating disorder. Not only that, but they die an average of 10 years earlier than women their age who don't have eating disorders.

While anorexia can put women with diabetes at serious risk for lows, insulin restriction can lead to dangerously high blood glucose levels and diabetic ketoacidosis (DKA), a condition in which the body, severely lacking insulin and therefore unable to use glucose for energy, breaks down fat instead, leading to a toxic buildup of ketones in the blood. Left unchecked, DKA can result in coma or death.

Complications are another worry. In women who restrict insulin, complications may appear early, just years after diagnosis, says Lorraine Platka-Bird, PhD, RD, a nutrition therapist and dietitian at the Center for Hope of the Sierras eating disorders center in Reno, Nev. "We see 20-year-olds [and] 25-year-olds with significant nerve damage, with significant kidney damage."

'The increased likelihood of diabetic complications comes as no bombshell for people with eating disorders. Most have been warned about complications since they were diagnosed. "I'd hear from everybody, 'You need to take insulin or you wo n't have legs when you're older,' but you don't put two and two together," Lewis says. Even when her hair thinned and her vision blurred and her hip bones jutted out, she avoided insulin doses.

"I think of an eating disorder as being a powerful monster to battle," says Goebel-Fabbri. "It's not about logic at that point. It's about the eating disorder taking over."

Treatment's Catch-22 Erin Akers's body was lead. She had neuropathy (nerve damage) in her feet. Her heart beat an irregular rhythm that was quickly becoming a regular part of her life. She was tired and irritable and depressed most of the time, but it didn't matter. She wouldn't go back to being fat.

Gone were the days of having her name, Erin Margaret, turned into the taunt of "Erin Margarine." Now the kids at school were complimenting her looks. So what if she missed so much school during her junior and senior years that she had to arrange for an individualized education plan? Who cared if she made eight trips to the hospital for DKA during her senior year or that one of those times was during her prom?

"I knew I felt bad and I knew that taking a shot helped, but the fear of being fat was too paralyzing," she says. "And that voice was stronger than anything at the time."

One night when she was 15, the voice told her not to take insulin even though she was exhausted and nauseated. She placed the usual bucket by her bed in case she couldn't make it to the bathroom to throw up. And then she went to sleep.

Akers woke in the middle of the night, her vision gone. She could hear her brother standing over her body, a body she wasn't in control of as it seized over and over again.

The episode wasn't enough to stop Akers from withholding insulin, a practice she continued throughout high school and into college without anyone being the wiser. That is, until uncontrolled diabetes and chronic sickness opened her up for a staph infection in her spine. The infection forced her to forgo her first semester of college, and by the time she was ready to leave her parents' Seattle home for college in Boston, her mother had decided: Erin was going to a facility to be treated for an eating disorder.

Treating an eating disorder is a delicate practice, one that becomes infinitely harder when diabetes is thrown into the mix. "In diabetes care, there's a lot of praise and support for somebody who tests regularly, counts carbs well, and measures their food and writes it down," says Marcia Meier, RN, BAN, CDE, a diabetes nurse educator at the Park Nicollet International Diabetes Center. "In the eating-disorder world, that kind of behavior makes an eating disorder worse."

The very treatment followed to maintain good diabetes control—even pinching the skin to inject insulin—often triggers disordered eating. "With someone with an eating disorder [without diabetes], we can tell them, 'Don't read labels and don't check your body,' " Taylor says. "But with people with diabetes, you can't tell them to stop doing that."

One of the biggest physical obstacles to overcome during treatment is the rapid weight gain that comes from starting insulin again. In shifting from profound malnutrition and insulin deficiency to an optimal range, the body can retain fluid. "Even if it's not a high change—say, 5 pounds—you're dealing with somebody who's acutely aware of body changes," says Goebel-Fabbri.

Though the swelling is temporary (exactly how temporary varies from days to months), it can trigger disordered eating. "I would start my [insulin] regimen on a Monday, and by Thursday I'd gained so much water weight—there was so much edema in my legs—that I would stop," says Nicole White, 25, who spent the better part of three years in an on-again, off-again relationship with her eating disorder.

Slow and steady is the treatment method of choice, say eating-disorder therapists, especially because lowering people's blood glucose too quickly—say, from 600 mg/dl to 100 in a day—can make them feel hypoglycemic even if they're not. And such rapid drops in blood glucose can drastically worsen retinopathy (eye damage) if it's present. But there's another reason people with eating disorders in treatment aren't put on a traditional diabetes management plan all at once: After spending months or years avoiding all forms of diabetes care, they can be overwhelmed with the day-to-day tasks associated with diabetes.

Learning how to handle the stress of diabetes management and listen to her body's hunger cues was a significant part of White's treatment when she traveled from Kansas to Nevada to spend two months in residential treatment, two months in partial hospitalization, and a month in outpatient therapy at the Center for Hope. "I learned my body's hunger cues. I learned what I don't like," she says. "I used to binge on potato chips. I don't like potato chips. I learned that."

Intuitive eating—eating when you're hungry and stopping when you're full—may not be the norm when it comes to diabetes care, but Platka-Bird uses it as a bridge between traditional diabetes management and the usual eating-disorder treatment. Instead of dosing insulin to fit a set number of carbs, her patients give half a dose, eat until they're no longer hungry, and then give the rest of the dose based on the meal.

Part of the challenge is changing a person's thought process when it comes to diabetes management and food, says Meier. Many people with diabetes and eating disorders have what Meier calls "black-and-white thinking." That is, "I didn't take insulin before breakfast, so since I've already failed, I may as well forget it for the rest of the day." Through treatment, people learn to accept minor setbacks and push through toward a healthier goal.

But getting people with eating disorders back on track when it comes to diabetes management is only half of the battle. The other side of recovery is perhaps the most difficult to treat: the mind.

Less Weight in Recovery?

In a study of women with diabetes and eating disorders, Ann Goebel-Fabbri, PhD, a psychologist at the Joslin Diabetes Center and an assistant professor of psychiatry at Harvard Medical School, found that women who stopped restricting their insulin maintained a healthy weight over the study period while those who continued to withhold insulin actually gained weight over time. The reason? Goebel-Fabbri suspects that as with bulimia, purging calories through the urine by skipping insulin doesn't get rid of all calories. "The message is really a message of hope," she says. "People can get better and not be fearful of weight gain."

Coming to Terms With DiabetesBefore an eating disorder could kill their daughter, Akers's parents took out a second mortgage on their house to pay for Erin's enrollment in a $10,000-per-month treatment facility. Akers had been battling an eating disorder for four years, and most recently her weakened body had contracted a staph infection in her spine. "They refused to pay for me to go back to [college] to kill myself," Akers says.

So, at 18, Akers was sent to the treatment facility in Florida, where she had a breakthrough: She was angry at her eating disorder for controlling her every action. And she was angry at her diabetes for burdening her body all these years. She wrote a letter to each disorder, explaining the rage she felt. "It was the first time I was able to grieve a life I wasn't going to have, to grieve a childhood I wouldn't get," she says. "Looking back, [my eating disorder] was a way to get back at a body that had betrayed me."

For the next year and a half, as she was in and out of recovery, Akers struggled with diabetes acceptance, the fear of gaining weight, and confusion over her identity. "A big problem that a lot of us have is we don't know who we are without the eating disorder," she says. "For so long, all I was was the sick girl."

But as helpful as it was to be surrounded by other girls with eating disorders, Akers felt completely and utterly alone. "The girls there had no idea what it was like to be diabetic," she says. A conversation on the topic with her therapist set the wheels turning for what is today one of the largest nonprofits for people with diabetes and eating disorders. In 2009, Akers started the Diabulimia Helpline so that people could call for resources or to talk with someone who knows what it feels like to fear the very medicine intended to keep you alive.

For Akers, now 23, the reminder of how far she's come is there daily in the women she tells her story to at conferences or those she interacts with through the helpline or its Facebook support group. But there is also a consistent reminder of what she could lose.

"Last week we had a girl who was 23 who died of a complication," she says. The death shocked many of the support group's members into taking a needed shot of insulin in their friend's honor. Others grieved but were still unable to take a shot.

The idea of her own mortality is what prompted White to finally get help. "I thought I was going to die, kill myself. But, at the brink, there was something in me pulling me out of it. I don't know if it was the pain I was in or what," she says. White finally realized that "killing myself, killing my body, making all of these complications I already have worse isn't worth fitting into better clothes."

For some people, eating disorders never fully go away. "Some of those thoughts and urges may come back," says Platka-Bird. "I don't think it has to be a day-in and day-out battle. A lot of people can get to the point of [being recovered] day to day, month to month, and year to year."

Though Akers has been fully recovered for three years, she still sees a therapist and still comes across eating-disorder triggers from time to time. "I do have days where I'll put on clothes and they're too tight," she says. The difference now: "I don't care."